“Momma, why does no one ever ask ‘where’s Kyre?’”
… (quick glance over to Richard) insert dagger straight to my heart.
“Kyre Grace, it’s because we don’t have to worry about you. You always stay close, you always know when it’s time to go. Ok baby?”
… “yeah” (turns her head to look out the window as the attended event starts to fade in the distance)
Kyrene Grace Harney is the typical middle child. She feels like she has to fight to be seen or heard. Her siblings demand and get way more attention from her parents then she does. I recently read an article on middle child syndrome:
“people tend to not notice they’re there. They end up feeling left out and forgotten. Parents tend to not notice their needs but focus on their dire emergencies only. Middle children seek love and happiness through friends and become social butterflies”
Just reading those words that describe my middle child, I felt sorrow, yet saw a strength that is being formed through the critical years of living in the shadows.
One day, I do plan to tell Kyre that she was the biggest best surprise that God had wrapped up in a bright shiny box for me. I know I won’t be afraid to tell her that I was fearful of having another sick baby and didn’t want another child to walk the hard, constantly evolving road of Cystic Fibrosis. I will see her pin point dimples in the corner of her smile as I tell her that God worked extra hard to knit her inside me as I grieved my dream of a big family, unaware of his big plan that would come when I least expected it.
Even though we found out her life would not come with the diagnosis that rattled and left her parents having to peel themselves off the floor of depression and grief each morning, nothing would prepare me for the role she would find in our family.
Mary Jaworski, who wrote Shadow Children, says:
“Parents overwhelmed by the draining daily demands of caring for a sick spouse or child unwillingly or inadvertently overlook the needs of the well children. The healthy children may end up feeling helpless, isolated and unable to cope with the anger, resentment, jealousy and fear and other powerful emotions that bubble up when a sibling, a parent or a beloved grandparent faces a life threatening disease. These are the shadow children and their numbers are growing as advancements in treatments help those with chronic and catastrophic illness live for years”
If I am honest, I fight for memories of Kyre in the tender years of infancy. The little things that I have carved space for with her siblings, seem to overwhelm the few I have of her. All I can think is that she came during such a scary time, Ezzy’s second hospitalization. Ezzy’s first lung infection. Ezzy’s second bowel obstruction. Yet I know that her little life is what kept me sane. I had little baby that only wanted me, only wanted my milk and only wanted to be held close at all times. She became the soul that would provide hours of playtime when Cayden would go to school and Ezzy had no one to play with since the school year always meant tons of colds, flu and other sicknesses. If I was too overwhelmed with therapies, cooking high fat meals, or just working through my own junk, Ezzy was there to watch all of Kyre’s firsts. Ezzy was almost 3 when Kyre was born. I watch Ya’el who is 3 now and her phenomenal memory and desires to interactively play with others, affirms that Kyre was sent to a little CF warrior that desperately needed somebody as we lived in our 4 walls, tucked away safely from the world.
With all that said, it has become a very present issue for us now as we see the years of growing up in Ezzy’s shadow is taking a toll on her. Because as time as gone on, Ezzy’s needs have become more time extensive, more detailed, more rigid. It never fails that when Kyre is in need, it is right in the middle of an important therapy or day to day battle of CF.
Having two little sisters has caused the feelings of neglect to well up and erupt at the most inopportune times as well.
Whether she looks ahead or behind, there are others fighting for the space that she has already given up on.
It was Kyre who said “I don’t know” after we asked her how she felt about Veil growing in my tummy. Kyrene had never been shy to show or say her true feelings.
After spending too many nights laying in bed worrying or early morning nursing sessions mulling over her. I recently had some time to see a very tender side of her that I believe is forming because of her life.
Our 14 yr old dog Lily, just passed away. It wasn’t sudden, yet it wasn’t immediately expected. We had honestly been praying a solution would happen for awhile. Her quality of life had gone down and high demands of her care was too much for a family of 7, who already have detailed care plans for a human. When both Richard and I woke and spoke over coffee and shared what had come to us in the morning hours, we knew her time was coming. We did our best to set aside time to show our children how we handle the looming possibility of loss. It meant more work to our week then we needed with the never ending stressors, but this dog was the first living creature we cared for in the early years of our relationship. It wasn’t Cayden who helped the most (the kid that teared up when we weren’t sure she would survive her bear attack this summer) instead it was Kyre Grace that provided a level of hospice care for our dying dog.
Kyre would be found right along side Daddy as they bathed Lily everyday, trying to keep the skin rot smell to a level I could handle. It would be Kyre that would dry her off, get a snack and rub her head when she would come home from school.
Maybe it’s because Kyre knows how it feels to be in need of love when it seems like there isn’t enough to share.
She recently told me that when they go to the library at school that she always gets books on animals while everyone else gets books on people. She rolled her eyes the other day when she told me a joint teacher that shares all the Harney kids, calls Kyre “Ezzy” all the time and she has to correct the teacher.
This year was her turn for a big party. We alternate every other year on a family or big party. So that way we don’t have 5 big parties a year. Richard and I had shared we were excited to see her in the setting of her friends. Not the tag along friends. Meaning the friends she gets to tag along with when they are playing with her siblings. These kids were HER friends. Each invited by her. Yes every single invite had a clause “if you are sick (cough/runny nose we ask you don’t attend). People said, we didn’t tell the kids we were coming until the drive here (because they were holding off, making sure their family was healthy and could help protect Ezzy).
A week out from the party she began the countdown on her own. She couldn’t sleep for several nights in a row, because the anticipation about something being about her was too much for her little soul to contain.
Today I watched my little girl float around the room from friend to friend. Hugs, laughter, dimple laced smile permanently engraved on her face was all that I could see. People had showed up for her, not anyone else.
It was today that I was shown that God has created Kyrene Grace to not be afraid of the shadow. Because it’s in the shadow that she will find others that need her strength and light. She will be able to comfort, offer love and friendship to those who feel forgotten or unloved. It’s in the shadow she takes in the whole picture. She watches, listens and sees there is more to every story. She recently told us verbatim what I had said to Richard when we thought she was eating breakfast, unaware of the conversation I was trying to say with hushed tones.
This intro to another article I found sums up Gracie:
“Children who have siblings with chronic illnesses or disabilities often find their lives are constantly interrupted by medical emergencies that trump regular kid cares like birthday parties and soccer games. These children learn at an early age to put another person’s needs first and are often better adjusted in the long run” (Siblings of Sick Children, Learn a Life Lesson Early. NPR 2010)
I know the design of our family is orchestrated by the one who has written Kyrene’s story. I also now, through the trials I have faced, he has always been faithful to bring me out of them alive and better for it. He will do the same for her.
God is up to something mighty in my child that at times does not feel like she is seen. He whispers to her, in her moments of sadness and heals what only he can, because I have seen her love and care for others when most wouldn’t.
Kyrene Grace, you are 6 yrs old today and even if it feels like the shadow seems too big, I pray that you will see that shadow is a protection God has given you and trusts that you will continue to have a responsive heart and eyes to those who need a tender soul.